Investigating inequalities in cancer treatment for people with learning disabilities

NHSE wanted to examine if there were any inequalities in access to cancer treatment between people with and without Learning Disabilities. To do this data from several sources needed to be brought together to show the full patient experience. Once this data was codified it could be statistically processed to see if any differences were highlighted.


Context 

The NHS Learning Disabilities Mortality Review (LeDeR programme had already highlighted that people with Learning Disabilities are dying sooner than people without. With cancer being one of the leading causes of deaths in all people, it was decided to do a deep dive into this topic. LeDeR data from NHSE was combined with Cancer Registry data, and the team from SCW and the University of Bristol worked together on the analysis.

Challenge 

Data linkage was important and so IG issues around sharing and linking LeDeR and Cancer Registry data needed to be overcome with the correct data sharing agreements and DPIAs. Data cleaning needed to be carried out – there were those who were in one data set and not the other, and patients who had cancer but didn’t die from it, who needed to be excluded.

This data cleaning was necessary so that there were comparable data sets of people with and without learning disabilities dying from cancer. This would enable accurate statistical analysis to be undertaken. The end goal was to see if there were any significant differences, so that this could be taken account in wider healthcare settings when providing cancer care to people with learning disabilities.

Solution

SCW worked with the University of Bristol to look at key data for these patients. This included age, sex, geography, route to diagnosis, stage of cancer and cancer diagnosis. Chi-squared and match z-tests were performed on the data using R statistical software to see if there were significant statistical differences between the patient cohorts. The process was refined over several months as different variables were matched against each other – some showed apparent differences so further testing was undertaken to see if this was significant.

Results were written up, and then sent to BMJ Open and published in March 2022. Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources | BMJ Open

Impact

Stage of cancer at diagnosis for adults with intellectual disabilities known from LeDeR data to have died with cancer and for whom linked data about the route to their diagnosis were available from the national cancer registry analysis is shown below

LeDeR (2017-2019)

  No. %
Stage I 88 18%
Stage II 78 16%
Stage III 105 21%
Stage IV 228 45%
Total no. of cancers 502 100%
Unknown/missing/unstageable 363  

 LeDeR, Learning (Intellectual) Disabilities Mortalities Review

The results showed that in two areas there were significant differences. People with learning disabilities were having their cancer recognised and diagnosed only at emergency attendances more frequently than people without learning disabilities. In addition, for those people with learning difficulties, they were also having their cancer diagnosed at a later stage, which meant that their cancer had already progressed to a later and more severe level. This suggests that people with learning disabilities will have much poorer outcomes, and ultimately more premature deaths from cancer than other people.

The investigation highlighted that changes in service provision will be needed to address this imbalance, particularly in primary care.

To find out more – Adam Cook, BI Consultancy Partner, This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 

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